Optimizing health-related quality of life (QOL) is an important goal for patients with any hematological malignancy, but for those who suffer from disorders that follow a relatively indolent yet refractory course, QOL is an especially prominent consideration. These latter conditions include the chronic myeloproliferative disorders (MPD), myelodysplastic syndromes (MDS), and chronic lymphocytic leukemia (CLL) – diseases that are rarely curable, but that are often associated with prolonged survival. The MPD include polycythemia vera, essential thrombocythemia, and myelofibrosis (which can be primary, or can arise during the course of polycythemia vera or essential thrombocythemia). MPD-associated symptoms that compromise QOL include pruritus, night sweats, unintentional weight loss, loss of lean muscle mass, and profound fatigue, while QOL-impairing complications include thrombosis, bleeding, and often-dramatic splenic enlargement. Likewise, MDS suffer symptoms related to cytopenias, and CLL patients must contend with cytopenias, complications related to adenopathy and splenomegaly, and “B symptoms” (night sweats, weight loss, and unexplained fevers). By directly surveying large cohorts of MPD, MDS, and CLL patients using validated QOL instruments, we demonstrated that the burden of symptoms in these patients is severe, and that excessive fatigue is the most common and troublesome symptom of all, far exceeding levels reported for matched disease-free controls in the general population. Management of patients with MPD, MDS, or CLL needs to take into consideration QOL issues, and clinical trials of therapeutic agents should include improved QOL as a valid treatment endpoint.
Chronic Lymphocytic Leukemia National Comprehensive Cancer Network Polycythemia Vera Essential Thrombocythemia Chronic Lymphocytic Leukemia Patient
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List of Abbreviations:
Brief Fatigue Inventory
Chronic Lymphocytic Leukemia
Chronic Myelomomonocytic Leukemia
Erythropoietin Stimulating Agent
Functional Assessment of Cancer–General
Federal Drug Administration
Post Essential Thrombocythemia Myelofibrosis
Post Polycythemia Vera Myelofibrosis
Quality of Life
Refractory Anemia with Excess Blasts
Refractory Anemia with Excess Blasts in Transformation
Refractory Anemia with Ringed Sideroblasts
Refractory Cytopenia with Multilineage dysplasia
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